Someone could be reading this now who has recently learned of their child's diagnosis and is considering how they should proceed. And if you are, I make this promise to you: Your pregnancy will be filled with moments of grief that can start to overwhelm you. You will suffer when people see your growing belly and congratulate you on your expected arrival. People will unassumingly bring you gifts. Babies R' Us will ask you if you want to register to receive continued offers. You'll stand in the shower and cry. You'll see other pregnant women and you'll resent them. You'll think about what you will miss. But the day your child is born, none of that will matter. You will experience a love that is deeper than you have ever known. You will feel a sense of peace that transcends your understanding, a supernatural peace. By all accounts, this is true. You will know that you gave your child every chance to live. In cases of organ donors you will know that you spared other mothers your grief. And you will never, NEVER regret your decision to let your child live and die in his own time.
Spoiler warning: This entry contains specific information about the season finale of "Private Practice" aired on May 15, 2012.
For the past three weeks, viewers of the ABC television series "Private Practice" have been following Dr. Amelia Shepherd's pregnancy, which will result in the inevitable death of her anencephalic son, whom she has, even in the season finale where she gives birth, has yet to name.
Let's dispel this myth first: Maternity panties. Amelia references them while she is in labor, but I don't think very many women wear them anymore. When I was pregnant I did see that they are still sold, however like everyday panties they come in various forms, many of which are no longer the over the belly type. Personally I never bought or wore a pair, and I'm not nearly as fashion conscious as Amelia, so I found that particular element a little hard to swallow.
Now to move on to one of the more glaring issues in this episode, the concern over harvesting the organs of an anencephalic baby for transplant. While I appreciate more than I criticize "Private Practice"'s efforts to take on this storyline, I am afraid they did a tremendous disservice in carrying the story out as they did. The show talked as though the organs must be transplanted from a still-technically living baby, and in fact in this episode, they were. However a number of moms from anencephaly support groups have been able to donate their baby's organs, and in each case their precious baby had already breathed their last breath in their arms. At that point, the clock does in fact start ticking, and the organs must be harvested within a certain timeline in order to be eligible for harvesting and transplantation. In most cases, whole organs will not be suitable for transplantation. It seems most commonly, heart valves are harvested.
I won't delve into the medical specifics of transplantation. I'm not familiar with them, as I was too cowardly to pursue this course for my own son. When Gabriel's diagnosis was confirmed, I asked the specialist if our child would be a candidate for organ donation. She said that he would not be, for reasons quite the opposite of the controversy on "Private Practice." She told me that because Gabriel didn't have a "complete" brain, his organs were not useful. I guess he sure showed her, when his organs sustained him for ten days against all odds.
I quickly learned that the doctor's information is incorrect. I also learned quickly that there is a surprising amount of inaccurate information out there regarding anencephaly, and the life and death of an anencephalic infant. Between the rare occurrence of the defect, and the even more rare decision to carry to term, the medical community doesn't know much. It's fair to say that at least in terms of basic information, the online support groups have more knowledge than our doctors. Doctors know what a book tells them; we know what we have lived. At any rate, I reached out to a friend, who met his wife when they were both in the hospital to have transplants themselves, and he and his wife looked for information to help me. Unfortunately, because of the delicacy of infant organ transplantation (literally, it is a delicate procedure because their organs are so small and fragile, and a delicate subject -- who wants to cut up a baby for parts?) I never did find out how, in California, I could have Gabriel's organs donated. I will admit to not pressing the issue -- as I previously mentioned, I was a coward, and couldn't bear the thought of Gabriel's body being taken apart, even when I considered what it would mean to another mother. Ultimately, it probably wouldn't have mattered. Gabriel passed in his home, not in a hospital, and it is unlikely his organs could have been preserved for harvesting and transplanting.
Amelia shares during this episode what she has learned in her research about children across the country waiting for organs. My friend and due date buddy Jenny Lees didn't have to know about the needs of each child personally to know that she wanted to donate her son Palmer's organs. Jenny and I were one day apart in due date, but because Jenny suffered from a common ailment during pregnancies of anencephalic infants, polyhydramnios, Jenny induced labor with Palmer about a week before her due date. Palmer was born on June 1, 2011 and lived for 55 beautiful minutes. He was baptised, held by his family including his big brother Spencer, and then passed from this world. Jenny has shared with me that given the severity of Palmer's defect, it is amazing that he was born alive and held on as long as he did -- We both believe that part of Palmer's strength was derived from his fate, to live on in the hearts of two other children who received Palmer's organs in donation.
Interestingly, as Amelia was in labor with her anencephalic son, the hospital was dealing with another controversial legal/medical issue that struck a chord with me. Pete was jailed after having taken his terminal patient off of his respirator, against his next of kin's will. In the previous episode, Troy was placed on life support by his father's orders, though Troy's partner informed both father and hospital staff that Troy never wanted to be on a machine. Because Gabriel came home with us, these were issues that Ben and I had to tackle. The Catholic Church's position on extraordinary means of life support is that there is no requirement that they be started -- no requirement to begin a feeding tube or respirator for example -- but once they are began they cannot be taken away when their removal will lead to certain death. This might seem like a silly distinction, but actually a parallel can be made between our common law regarding rescue. The law doesn't require us to act. For example, if we see someone drowning in a lake, the law does not compel us to stop and try to rescue them. However, once steps have been taken to rescue we must see that rescue through. To stop halfway through opens a rescuer to civil and criminal liability.
Though Ben and I had agreed that Gabriel would not be put on a feeding tube or respirator, the morning that he passed I knew that if Gabriel lived much longer we would have to consider the feeding tube. I wouldn't have my child starving to death. The decision was taken from our hands when Gabriel began to seize that morning. We tried the oxygen mask once, but when that didn't work we agreed we would spend these last hours with our child making him as comfortable as we possibly could. We didn't try to keep him alive, his human will did. He fought to live because it is our nature to live -- we spoke to him to give him the freedom to go because it is our nature to love. I can't agree with what Pete did, because there are rules in place for a reason and he violated those rules. But I can relate with all my heart to Troy's partner, who fought for Troy to never be placed on a respirator. He argued that Troy was in a state of limbo, caught between here and eternity, and that when you love someone you let them go. When Pete turned off the respirator, Troy's partner climbed into bed beside him, held him and promised him that he would see him again someday. I can't remember Troy's partner's name. I can't remember because in large part it doesn't matter. Who mattered then was Troy. Who mattered to me was Gabriel. For those who think I was wrong to bring my child into this world knowing he would die, for those who think Troy's partner was wrong for letting him go like he did I can only say this: We should all be so blessed as to die surrounded by love the way Troy and Gabriel did. There is no better way.
We hear it said that to bury one's child is unnatural. To have our child die before us seems so wrong. Indeed, it feels wrong. But in those final moments when we held our son, in those moments where we prepared his tiny body to be turned over to the funeral home, something felt so very natural. We were doing what every parent does. We were caring for our child. And it breaks my heart to remember the pain but I am still always warmed when I remember the peace.
Which brings me to what I believe is the most important thing "Private Practice" did. In complete opposition to my own experience, Amelia felt no peace before her labor. She was tortured by her decisions and her circumstances, she was alone and guarded herself to remain alone. She referred over and over again to her baby as "brainless," much to the anger and dismay of much of the anencephaly community. But I was never offended by her use of the term. I wasn't offended, because I knew if the show played their cards right, in the end the continued use of the term would just add to the power of the episode when Amelia gave birth.
You see, I am no hero for carrying Gabriel to term. I am Catholic, and in addition to my firm belief in every person's right to live, I am terrified of Hell and terrified of how I might have jeopardized my husband's soul and my own if I had "terminated" Gabriel early. We can say that "Private Practice" dodged controversy by not fully discussing Amelia's rights under the law to end her pregnancy early, but all they really did was set the show on track to show the supernatural effect of the birth of a terminally ill child.
Amelia thought when her brainless baby was born she didn't want to see him. She, a neurosurgeon, didn't want to see what had formed of his brain. She wanted him shuttled away before he "squeaked" so she wouldn't have to think about him again. For years doctors and medical staff thought just taking a woman's baby was even the right thing to do, and many women have revealed to me in the last year just how detrimental the effects of never holding or seeing their child have been. But even a dog must see their child. Even animals must hold their babies, stillborn, deformed, whatever. Our need is animal and inexplicable, and even Amelia couldn't fight that instinct. She had to hold her son. The creators of the show bravely revealed a model of a baby that was a striking representation of an anencephalic baby. Even the sounds he made brought a flood of tears as I remembered Gabriel's own squeaks. And when she looked at him the impossible happened. She didn't see a defect. She didn't see an anomolous freak. She saw her son, and he was the most beautiful baby she ever saw. Everything about him was so perfect it was almost impossible to believe that something was missing under that cap, but even when she removed the cap he was beautiful to her still.
She called her baby a unicorn baby, because he was going to do magical things. I think of the many mommies I have met in infant loss, whose babies have done magical things from beyond the grave. I think of my son Gabriel, my sweet little boy with the alien appearance, and of the magical ways that he continues to move people eleven months later. I know that the world "Private Practice" depicted was dramatized and exaggerated for effect, but I know one thing that is not the product of dramatic license is the peace we feel in those moments when we give our child over to death and whisper to them, "Someone is waiting for you; and I will be along soon enough."
One of Blogspot's features allows me to view some of the various sources of traffic to Gabriel's blog. I know that people can Google search "anencephaly," "life expectancy of anencephalic baby," "Private practice, show," thanks to an entry about Gideon they can search "hip dysplasia," and "terminal infant" and Gabriel's blog will come up. Someone could be reading this now who has recently learned of their child's diagnosis and is considering how they should proceed. And if you are, I make this promise to you: Your pregnancy will be filled with moments of grief that can start to overwhelm you. You will suffer when people see your growing belly and congratulate you on your expected arrival. People will unassumingly bring you gifts. Babies R' Us will ask you if you want to register to receive continued offers. You'll stand in the shower and cry. You'll see other pregnant women and you'll resent them. You'll think about what you will miss. But the day your child is born, none of that will matter. You will experience a love that is deeper than you have ever known. You will feel a sense of peace that transcends your understanding, a supernatural peace. By all accounts, this is true. You will know that you gave your child every chance to live. In cases of organ donors you will know that you spared other mothers your grief. And you will never, NEVER regret your decision to let your child live and die in his own time.